The new SEN Reforms – Will they really make a difference to families?

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Sema Cemal

The new SEN (Special Educational Needs) reforms have been in force since September 2014, replacing Statements with Education, Health & Care Plans (EHCP).

Described as the ‘biggest reform of SEN for over 30 years’, the changes are intended to “put children, young people and their families first”, offering a “person centred” approach and the promise of professionals “working with and listening to families about things that are important to them in order to help them achieve their aspirations”.

These reforms come at a time of huge budget pressures, with statutory agencies likely to be involved in creating and maintaining a child’s EHCP all facing budget cuts – schools, health and social care.

When I wrote about my 7-year battle to meet my son’s educational needs, over 100 parents contacted me. Most of them commented on the difficulties they face getting educators to meet their child’s needs, especially when it…

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The new SEN Reforms – Will they really make a difference to families?

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The new SEN (Special Educational Needs) reforms have been in force since September 2014, replacing Statements with Education, Health & Care Plans (EHCP).

Described as the ‘biggest reform of SEN for over 30 years’, the changes are intended to “put children, young people and their families first”, offering a “person centred” approach and the promise of professionals “working with and listening to families about things that are important to them in order to help them achieve their aspirations”.

These reforms come at a time of huge budget pressures, with statutory agencies likely to be involved in creating and maintaining a child’s EHCP all facing budget cuts – schools, health and social care.

When I wrote about my 7-year battle to meet my son’s educational needs, over 100 parents contacted me. Most of them commented on the difficulties they face getting educators to meet their child’s needs, especially when it comes to getting:

  • Schools to understand, accept and meet their child’s needs – many felt staff lacked awareness, skills or training in special needs, especially ‘hidden disabilities’ such as Asperger’s Syndrome;
  • Local authorities (LAs) to acknowledge and assess their child’s needs – many had to fight to get an assessment in the first place and disappointed to be told their child did not need a Statement of SEN;
  • The right support for their child at school (speech & language therapy, occupational therapy etc.) – some believed costs are often put before a child’s needs;
  • Their child into an appropriate school. There was a lack of choice when it comes to finding the right school for their child, especially high functioning children – parents often had to fight over limited places within their own borough, or to get their child into an out-of-borough or independent school.

Sadly, there were common themes throughout parents’ stories – – the confrontational relationship between parents and schools/LAs, the lengthy costly ‘battle’ to get their child’s needs met, families feeling stressed and unsupported. Many children with special educational needs seemed to be falling though the cracks as a result of financial pressures on the system – attempts to support them were often “resource-led’ rather than ‘needs-led’.

For the reforms to be effective and make a real positive difference to families, I believe two things need to happen:

  • A major culture change within schools and LA’s to put the child’s needs first, before cost considerations, and genuinely listen to and act on parent’s views;
  • An increase in resources – invested in staff training, the system of assessing and monitoring pupil’s needs, ensuring the right provision is more easily available to support pupils in mainstream as well as special schools, supporting families, monitoring parent experiences of services and offering a greater choice of schools and provision for children with special needs.

Culture change is a long-term vision and will not be possible without significant investment of resources to change attitudes. In the current climate of budget cuts, it is clear that there will not be any extra money in the pot – most LAs are reducing not increasing their budgets in this area (despite the ambitious aspirations of the reforms). 

 

How are the reforms working in practice?

It’s difficult to be objective about the reforms when you have been through such a long costly battle to get your child’s needs met, but I’ve tried my best to keep an open mind.

As far as I’m aware, there has been very little evaluation of the reforms to date.

I have kept myself informed about what is happening on the ground by attending seminars, talking to parents about their experiences and checking out online websites/forums.

I have been quite concerned about what I’ve seen and heard.

The ‘lone parent’ – still unsupported and without ‘a voice  One thing I noticed at all of the seminars I attended was the desperate attempts of parents to voice their views about the difficulties they face, only to be told to stop talking (“this is not the right forum for expressing your views”). A few weeks ago, I attended an information seminar about the reforms organised by my own LA – whenever a parent talked about their difficulties, they were asked not to speak about their personal situation. It was painful to watch. There was an overwhelming feeling of isolation and powerlessness amongst parents who tried to voice their views but were not being listened to. When I asked the presenter what would be the right forum for giving our feedback, I did not get a satisfactory answer. There was very little evidence of a ‘parent centred’ approach in any of these seminars.

The ‘battlecontinues – you still have to fight to get the right support  Many parents I’ve spoken to have mixed feelings about the reforms – hopeful (that the aims and aspirations will be implemented properly and result in real improvements) but highly anxious (about how the changes will effect them and whether it will make things better or worse).

Online parent forums/websites provide a good source of information about how parents are experiencing the reforms and provide strong evidence that parents are still facing the same struggles to meet their child’s needs. Things are certainly not going as well as they could be.

Special Needs Jungle (SNJ) is one of the best parent-led online forums. A few weeks ago, they had a post about the reforms “SEND reforms: What YOU told us” – asking for views so they could pass them on to the SEN Minister, Ed Timpson. I was taken aback by what both parents and professionals had to say.

SNJ received over 30 pages of comments – only one comment was positive, the rest were all about the difficulties with the reforms. The main concerns were:

  • Poor, wrong, misleading or no information for families – that they did not receive any information or were given the wrong/misleading/jargon-filled information (“I don’t understand what is happening and I am worried that they are going to cut corners and not do things properly”, “It feels as if our LA have taken the opportunity to make the process more bureaucratic and difficult to access”);
  • Lack of understanding or knowledge amongst LAs/ Practitioners – that front line staff did not understand what was expected of them or hadn’t received much information (“It’s just a statement with a different name”, “Decision makers and team leaders are still very much processes and pennies before people”)
  • Parental and young person involvement – many questioned whether LAs were aware that they were supposed to be working with families (“The county has substantial difficulty in engaging with parents and young people, very tokenistic and at times quite hostile”, “The new legislation very clearly states that the young person should be central to the whole process. At no point has my son’s views been asked for”).

SNJ summarised the comments as follows: “Families are feeling stressed and not supported, practitioners are confused and in some areas very angry at the lack of knowledge or support they have received and the ‘us and them’ relationship does not appear to be improving, in some cases it appears worse than ever”

In summary

It’s been less than six months since the reforms were introduced and there are bound to be some teething problems, but the early indications are not good.

It is clear that families are still struggling to get the right support for their child and that parents/carers still do not have ‘a voice’. Thank you SNJ for giving parents a voice.

It is also clear that professionals responsible for implementing the changes are also facing difficulties and are not being properly supported. Some of the questions raised by front line staff responsible for implementing the changes are:

  • Have schools and/or inclusion managers been supported and trained to convert or initiate the new EHCP?
  • What is happening with the children for whom assessment has just begun, is there enough rigor or manpower to maintain, convert and initiate new assessments?
  • Have all LAs put parent advocates and school support systems in place?
  • How many conversions have taken place and what are parents’ views of the process?

I just hope the Government ‘listens’ to the concerns of both families and professionals and start to address the difficulties they face otherwise this will just be another cosmetic exercise.

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If you have a story that you would like to share about your experiences, good or bad, I would love to hear from you.

 

 

Asperger’s & Special Interests – At what point does a ‘special interest’ become an ‘obsessive compulsive disorder’? Can medication ‘help’?

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My Asperger son is back to school after an eight-week break. It’s been a long summer – I’ve spent most of the time trying to get through the day.  The thing I found most difficult was managing his all consuming interest in vacuums and cleaning, which spiralled out of control over the holidays.

Cleaning and vacuums dominate his world – this is what he:

  • Constantly talks about;
  • Repeatedly asks the same questions about;
  • Searches for on the computer (adverts, u-tube videos);
  • Feels compelled to do (vacuum carpets, mop floors, wash dishes, dust surfaces);
  • Gets distressed about/criticises us for if we attempt any cleaning activity in our home (worrying about bacteria, salmonella, food poisoning).  The kitchen has become a ‘no-go’ area.

If I manage to get him out of the house, all he wants to do is visit shops to check out vacuums and cleaning gadgets/ products.

I have mixed feelings about his special interests – should I:

Encourage them? He is a sensitive, creative and intelligent child, with an extraordinary capacity to focus. His interests help him relax and, if properly channelled, he could be the creator of the next super vacuum (Why not? He has the determination and potential to achieve this);

  • Or, Try to stop/limit them? His interests can get obsessional at times, especially when he is anxious – this can be difficult to manage at home and isolate him from his peers and the wider community.

Last week, I attended a meeting at CAMHS (Child & Adolescent Mental Health Services), the NHS service that supports children and their families. The Psychiatrist told me my son has Obsessive Compulsive Disorder (OCD) and needs treatment, starting with medication.  He recommended Sertraline, a class of anti-depressants called selective serotonin reuptake inhibitor (SSRI), used to treat anxiety, depression and OCD.  SSRIs target the brain by altering the balance of chemicals in the body called serotonin. It’s claimed that SSRIs can reduce the anxiety around the obsessions, enabling the person to tolerate the frustration of not carrying out their obsessions. When I voiced my concerns about giving my son anti-depressants, the Psychiatrist said, “let’s try it and see how it goes”. I left the meeting feeling uneasy. I had so many unanswered questions in my mind – Does he have OCD? Is it right to give a 12-year old child a mind-altering drug to control his/her thoughts and behaviour? Will it help? What are the side effects?

 

I decided to find out more about the use of drugs with young people on the spectrum who suffer from anxiety and repetitive behaviour.  I was shocked by what I found out:

  • UK physicians prescribe drugs to 29% of children/young adults with autism in their care (1);
  • There is a lack of reliable evidence about the effectiveness, possible side effects and long term safety of drug treatments such as SSRIs amongst children on the autistic spectrum – most of the evidence is anecdotal or based on poor quality research (2-5);
  • SSRIs have side effects (restlessness, sleep disturbances, suicidal thoughts, self-harm) and may be harmful (2-5);
  • There are no guarantees when prescribing these drugs, only ‘possibilities’. Finding the right medication often comes down to ‘trial and error’ (if one drug ‘does not work’, practitioners often alter the dosage or try another one).

I came across one parent’s disturbing story about her son’s reaction to a low dose of anti-anxiety medication (6):

“[His] reaction was bad. Bad, bad, bad. He lost more hard won sills. His language use nose-dived. And his repetitive behaviours both increased and went into overdrive, shifting from worrisome to disabling. On Zoloft (Sertraline), [he] couldn’t get through a single previously independent routine without help … [his] restlessness destroyed his ability to concentrate on any task, no matter how small … Watching my son lose skills, lose control because of a decision we’d made on his behalf absolutely wrecked me. I cried, a lot, because there was no way to take quick action – Zoloft is not a drug a person can just quit. It takes at least a week to taper off and another to flush out – or weeks to flush out, in [his] case”.

 

Critics of medication claim these drugs are prescribed because they are quicker and less costly to administer compared with other interventions, for example:

  • Ari Ne’eman believes they are a quick and easy ‘short cut’ for more appropriate treatments: “A sizable percentage of the medications being prescribed are serving as a means of chemical restraint, rather than having a legitimate therapeutic purpose” (7);
  • Dr Gleason believes limited access to specialists in the assessment and treatment of autistic children means the only available treatment is pharmacological – although most families wish to avoid drugs, many have had little support or opportunities for other interventions (7).

 

Psychological interventions that focus on the underlying causes of obsessional behaviour (often anxiety) and stress-reducing strategies have proven to be effective with young people on the spectrum who suffer from OCD. Cognitive Behaviour Therapy is a talking treatment that can help to overcome some of the symptoms, by helping the person learn new ways of thinking and doing things in response to the obsessions.

However, 1-1 therapy is more costly and often difficult to access on the NHS.  In one study of parents of children on the autistic spectrum, 44% found it difficult to get a first referral to CAMHS for their child (some had to wait two or three years for a referral) and 80% said there had been times of crisis with their child’s mental health when they needed support but the majority were unable to access that support (8).

 

In summary:  This is a complex area and there are no easy answers. However, there is one thing I’m sure about – I am not prepared to give my son a mind-altering drug just to “see how it goes”.  His interests may border on obsessional at times but they serve a vital purpose (they help him relax) – if you try to alter his thoughts and behaviour through medication, who knows what the outcome might be!  It’s simply not worth taking the risk.

 

NB:  Some parents have had a positive experience with medication, saying their child’s behaviour improved after taking these drugs, relieving some of their symptoms.  Some drugs may be effective with some children so it’s important not to judge or berate parents who go down this route.

 

REFERENCES (& EXTRACTS) 

  1. Medication nation, L Geggel, Simons Foundation, Autism Research Initiative, 28.06.2013
  2. SSRIs, Raising Children Network, Updated 01.09.2014. “This medication can have some side effects including hyperactive or impulsive behaviour, concentration problems and sleeping difficulties. There is also a possible link to suicidal thoughts … Research on the effectiveness of treating the core symptoms of ASD shows mixed results. Some studies have shown positive effects from this therapy, but others have found that SSRIs are ineffective for ASD … Emerging evidence suggests SSRIs aren’t effective for children and can cause harm … More high-quality studies are needed”.
  3. SSRIs, Best Health website, Updated 21.09.2014: “There has not been much good quality research (randomised control trials) on SSRIs for treating autism in children … Many doctors agree these drugs can help children with autism. But there is not enough research to be sure”
  4. Most meds don’t help autism, studies show. CNN.com Blogs, 04.04.2011: “The review found that drugs do little good … Although many children with ASD’s are currently treated with medical interventions, strikingly little evidence exists to support clear benefit for most medications”
  5. SSRIs Not Recommended for Autism in Children or Adults Based on Current Evidence, P. Anderson, Medscape Education Clinical Briefs, 08.17.2010. “Clinicians and parents have hoped that SSRIs will help core features of autism as well as associated problems, but there is no strong evidence that they do … The analysis found no evidence that SSRIs are effective in children with autism and may even be harmful … In the 5 studies of children, there was no evidence of benefit … and some known harms”
  6. When Medicating Kids Goes Very, Very Wrong. Shannon Des Roc’s Blog, 31.10.2011
  7. Autism and medication: A new study prompts debate, B. Arkley, Child Mind Institute, 19.06.2012 (reference to Ari Ne’eman & Dr Gleason)
  8. You need to know, The National Autistic Society, 2010.

Autism, Women & BAME Community Seminar

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I was a speaker at a seminar on “Autism, Women & BAME (Black, Asian & Minority Ethnic) Community” at Birkbeck University last week, organised by A2ND VOICE in association with NABSS.

Speakers from different boroughs, communities and cultures came together to share their experience as parents/carers of those on the autistic spectrum. As well as sharing my story about my 7-year battle to meet my son’s special educational needs, I heard other parents’ distressing stories about their fight to meet their child’s needs, especially those involving young adults on the autistic spectrum who have been let down by our care system – instead of being provided with effective support/therapies, they have been misdiagnosed/ mistreated, ending up:

• In hospital/residential institutions, prescribed with a toxic cocktail of drugs to control their
mood/behaviour (often against their parents’ wishes), ending up unresponsive/mute;
• In the care of social services (sectioned under the Mental Health Act, removed from the family home …);
• Detained by the police (ending up in custody/a prison cell).

By the end of the seminar, two things became clear to me:

1. Despite our different experiences, we all had one thing in common – having to go through a long, costly battle to ensure our child’s needs are met; fighting to get help for our undiagnosed, misdiagnosed, unsupported child/young adult; and being patronised, humiliated or criticised about our parenting skills along the way.
2. After my battle to get educators to meet my Asperger son’s needs, I was hoping it would be smooth sailing from now on. However, it seems there is a huge gap in services for young adults on the autistic spectrum; as one parent said: “Once they leave school, there is nothing out there for them, no support at all”. I am really concerned about what the future holds for my son and for other young adults with autism/Asperger’s.

People on the autistic spectrum are vulnerable – if their needs are not met, they are at high risk of isolation, exclusion and mental health problems (depression, hospitalisation, imprisonment, suicide).

Research by the National Autistic Society found that nearly two thirds of adults with autism do not have enough support to meet their needs and one in three are experiencing severe mental health problems due to lack of support (Rosenblatt, M: I Exist: the message from adults with autism in England. London, NAS. 2008).

Autism costs the UK at least £32bn a year in terms of treatment, lost earnings, and care and support for children and adults with ASD (Journal of the American Medical Association Paediatrics). The figures show a clear need for more effective interventions to treat autism, ideally in early life, to make the best use of scarce resources.

The evidence is strong and clear, but progress is slow.

Parents need to be heard and seminars like these help to raise awareness of the challenges facing our families. Thank you Venessa at A2ND VOICE for organising this seminar and for giving us ‘a voice’.

Happy holidays – CenterParcs here we come

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As I pack for our trip to CentreParcs, I can feel my stress levels going up. My son’s begging me to bring his Hoover with us (he doesn’t like the Henry vacuums provided in the villa) – should I, shouldn’t I? What was I thinking – one week away, on my own with two children, one of whom has Asperger’s! Sharing my anxieties with family and friends only makes me feel more guilty and ungrateful – “stop being negative”, “you’ll have a great time”, “it will be fine” they tell me.

I’m trying to be positive but I have this habit of checking out various online autism sites. This is what I came across this morning:

• Other parents’ moving stories about their struggle to cope with their autistic child/children over the summer – mainly mums exhausted from trying to meet their child’s complex needs (sensory, social, emotional) or partners looking forward to a relaxing break only to feel frustrated when faced with the reality of coping with a challenging child at home;
• An inspiring post by Laura Rossi on the website ‘Scary Mommy’ – “Hating Summer as a Special Needs Mom”. Definitely worth a read. Here are a few extracts that made me feel I was not alone: “As a Special Needs Parent, I find myself hating summer; the first days fill me with a mixture of terror, guilt and anxiety”, “I used to love summer … Now, I find myself wishing away the entire season”, “Special Needs Parenting is challenging 365 days of the year … summer is unique because it is long and most special needs children expect the routine, support, predictability and familiarity of the school year”. “In a word, summer is anything but easy living for us”.

Thankfully, I came across a few websites offering useful tips for getting through the summer whether you go away or stay at home. Check out: autismparenthood.com – Vacation tips for kids with Autism or Asperger’s Syndrome.

Happy holidays to all my followers. Hope you manage to relax and take time out for yourselves.

Two weeks into the summer holidays

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Just returned from a trip to Brent Cross shopping centre. My son wanted to test the Sebo vacuum cleaner at John Lewis and I wanted to get him decent clothes – a win-win situation?!  Was a stressful morning as he did not like any of the clothes in 10+ stores.  But, I’m determined.  We went from shop to shop and, hey, we ended up with a pair of trousers and swimming trunks for our trip to CentreParcs next week … VICTORY!  The reward = John Lewis, where the staff were fantastic – they embraced my son’s fascination with the Sebo vacuum cleaner, made him feel “happy” – this contrasted to his trip to Curry’s last week where a member of staff followed him around ‘as if he was a criminal’ and told him off for “playing with their vacuums”.  He felt “embarrassed and sad” – Curry staff were awful, so aggressive and insensitive, even after we told them he is saving up for a vacuum cleaner (he has £170 in his ‘bank’).  So sad that so many people are so intolerant of so many things.   My advice, avoid Curry’s at all costs.

End of summer term – time for celebration and reflection

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My son broke up from school last week and we’ve had so much to celebrate – his 12th birthday, his end of term school events (play, reports handed out, certificates awarded, prize giving), my daughters’ achievements (including coming third in the 100 metre race at school), my nieces 21st birthday and my friends daughters Bat mitzvah.

Although I’m still recovering from my seven-year battle to get my son’s educational needs met, I still have the energy to celebrate the good things in my life. My biggest achievement ever and the highlight of the last academic year = my son is so much happier at school. Amazing that his school has managed to turn things around in one academic year, improving his self-esteem, confidence and future aspirations.

After one year:
• He loves school (not once has he said he does not want to go);
• His educational levels have improved in almost every subject;
• On the last day of term, he was in tears, saying he will miss his teachers and friends. He came home with several certificates (Swimming Award Scheme, Water Skills and Excellent Progress Award);
• On prize giving day, he was awarded an End of Year Commendation from the Head Teacher for “Contribution to the Base”.

The questions I keep asking myself are:
• How did his school manage to turn my school-phobic, anxiety-riddled child into a confidant and happy young adult almost overnight?
• Why don’t educators listen to and learn from the experiences of so many other parents like myself? Why does it feel like we don’t have ‘a voice’?

The provision at my son’s school enables pupils to “flourish rather than survive”. It provides:

• Specialist trained teaching staff and in-house therapists
• A curriculum that is adapted to suit each pupils’ needs – individually tailored strategies to support a child’s learning needs and development
• A strong focus on developing social and life skills – preparing for life after school not just exams.

After reading other parents comments, I realise that so many children with special needs are not even surviving at school, let alone flourishing. It’s time the Authorities adopted a longer-term approach to educating our children and acknowledge the overwhelming evidence that if a child’s needs are not met at school, this could have serious repercussions in the long term.